Policy

News

DNA strand with magnifying glass

Wolf Describes Policy Solutions for Future of Genomic Medicine

December 11, 2018

The latest issue of Minnesota Medicine features an article by Consortium Chair Susan M. Wolf about the legal and regulatory underpinnings needed to advance genomic medicine. It is part of a special issue on the future of medicine, and provides an overview of the NIH-funded LawSeqSM project Wolf co-leads with Ellen Wright Clayton (Vanderbilt University) and Frances Lawrenz (University of Minnesota). LawSeqSM is dedicated to analyzing current US federal and state law and regulation on translational genomics. Results of the effort will be the development of consensus guidance on what the law should be, as well as the creation of a website aggregating the statutes, regulations and case law related to genomic medicine. The Minnesota Medicine article was co-authored by Kathryn Grimes, Communications Director for the Consortium.

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Prof. Consuelo H. Wilkins

"Law, Genomic Medicine & Health Equity" Event Tackles Policy Needs

December 3, 2018

On Thursday, Nov. 29 a group of eminent scholars and researchers convened at Meharry Medical College in Nashville to evaluate the current state of precision medicine and how access to it can be improved. Conference presenters shared a wide-ranging array of information about obstacles and solutions to delivering genomic medicine in clinical settings, with a particular focus on policies to promote health equity. The event, which involved several dozen in-person attendees and 200 webcast viewers, concluded with a talk by Consuelo H. Wilkins (Meharry-Vanderbilt Alliance). Prof. Wilkins described her work with the federal All of Us Research Program, for which she serves as head of the Engagement Core. She emphasized the need to address the underrepresentation of minority populations in research, as well as mistrust and limited genomic literacy. One of the important takeaways from Prof. Wilkins' talk was the need to reframe the benefits to research participants of collaborating in studies, from returning results to returning value – that is, information these communities find useful. The event was presented by the Meharry-Vanderbilt Alliance, Vanderbilt University Medical Center, the Consortium, and the Minnesota Precision Medicine Collaborative. A special symposium based on the conference will be published in and issue of Ethnicity & Disease guest edited by Marino Bruce (Vanderbilt University), Vence L. Bonham (National Human Genome Research Institute - NHGRI) and Consortium Chair Susan M. Wolf (University of Minnesota). Video of conference sessions will be posted in the next 10 days; to receive notification, please email consortm@umn.edu

News

Lynn Blewett

Health Policy Directed Study Course Offered Spring Semester

November 20, 2018

Prof. Lynn Blewett (School of Public Health) will be teaching a Directed Study course, PubH 8893/Section 003, on health policy during the spring semester. It's intended for students who'd like to discuss current topics, including activities at state and national legislatures. Students will work with Prof. Blewett to determine proposed work for credit. Projects include: selecting, tracking and documenting a specific piece of legislation as it works through the legislative process; working on a chapter for book on State Health Policy; research and analysis of current health policy issue; attending legislative hearings, interviewing legislators and stakeholders; and writing up pros and cons of health policy issues. Interested students should email blewe001@umn.edu for permission number.

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Globe made out of puzzle pieces

Climate Change Report Sparks Changes to Everyday Habits

October 29, 2018

Earlier this month, the Intergovernmental Panel on Climate Change (IPCC) released an alarming report forecasting the effects of global warming above 1.5°C when compared to pre-industrial levels. The IPCC whitepaper predicted massive forest fires, widespread drought and increasingly violent storms in the coming decades, and called for the complete elimination of the use of fossil fuels by 2050. Given the dire outlook, it's tempting to succumb to despair and inertia. However, local environmentalists are both calling for positive action and taking steps in their personal lives to help address the problem. According to the Star Tribune, among those working on small-scale solutions is Jessica Hellmann, Director of the Institute on the Environment, a Consortium member. Prof. Hellmann's family has installed solar panels on their St. Paul home; she is renowned for her advocacy of not simply working to stem climate change, but also plan for adaptation in the face of a warmer planet. “The narrative is that we’re going to have to … sit in the dark in a cave. The life that alternative technologies can provide is pretty enriching,” she said. Read the entire article here

News

Science Magazine logo

Wolf, Evans Critique Recent National Academies' Return of Results Report

October 11, 2018

In an article appearing in the Oct. 12 issue of Science, Consortium Chair Susan M. Wolf and Barbara J. Evans of the University of Houston Law Center sound the alarm about a recent report from the National Academies of Sciences, Engineering, and Medicine. The Academies' report on "Returning Individual Research Results to Participants" makes recommendations on how to share research results and data with people who agree to participate in research studies and calls for problematic changes to federal law. In Science, Wolf and Evans argue that the Academies' recommendations are "rooted in confusion about the law." They maintain that "The Academies' report endorses the idea of participant access to results and data, but then builds daunting barriers. The report rejects established legal rights of access, two decades of consensus guidelines, and abundant data showing that participants benefit from access while incurring little risk. The report too often prefers paternalistic silence over partnership. . . . True progress on return of results requires accepting participants' established rights of access and respecting the value that participants place on broad access to their data and results. The next step is not to build barriers but to promote transparency." Read the entire Science article here

News

Lisa Ikemoto

Spotlight on Emerging Legal Approaches to Cyborgs, Biohacking

October 4, 2018

A recent Star Tribune profile of Frances Shen, JD, describes his work in neurolaw, a field he has pioneered. Prof. Shen, an affiliate member of the Consortium, focuses on the intersection of brain science, law and policy. In his research, he uses advances in scanning and other technology to better understand the connections between the brain and human behavior. He notes, “Seeing the world through brain circuitry is a really foundational shift, not just for law, but for policy. . . . A hundred years ago we just had to guess how the mind was working. And we still have to make a lot of guesses. But we know a lot more than we did . . . and it would be nice if the law caught up.” Another take on emerging technologies and the law will be presented by Lisa Ikemoto, JD, LLM (University of California, Davis) on April 3, 2019. Her lecture, "Biohacking and Cyborg RightS: Coping with Promise and Peril," will describe the work of citizen scientists and others who are working outside of academic and institutional labs to enhance human capacity. Prof. Ikemoto will examine the implications of "cyborg rights" for law and for defining the human. Her lecture is part of a series, Consumer-Driven and DIY Science. Learn more and register here

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Jessica Hellmann

IonE Among Recipients of NAFKI Challenge Grant

September 12, 2018

The National Academies of Sciences, Engineering and Medicine (NASEM) has awarded a NAFKI Challenge grant to a team including Jessica Hellmann (left) of the Insitute on the Environment and Bonnie Keeler of the Humphrey School of Public Affairs. The $500,000, two-year research project, “Institutionalizing Interdisciplinarity," will use sustainability science as the focus of an effort to create and model the infrastructure required to make research across multiple academic areas more common and effective. According to Prof. Hellmann, “Society needs science – and scientists – more than ever, because we need knowledge to confront our greatest societal and environmental challenges. But it takes a special kind of scientist, one who can work side by side with society, to bring about a better future. This project convenes the organizations and leaders who are creating and supporting this new kind of creator and doer. This group can change how science is done, why it is done, and for whom.” The Institute on the Environment (IonE) is a Consortium member, and represents the type of multidisciplinary research at the intersection of science and society the Consortium has pursued and supported since its founding in 2000.

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Louise Slaughter

Louise Slaughter, Lead Author of GINA, Passes Away

March 20, 2018

New York representative Louise M. Slaughter died last week at the age of 88. She was trained as a microbiologist and was one of the longest-service members of the US House of Representatives. Among her many accomplishments was serving as lead author of the Genetic Information Nondiscrimination Act (GINA) of 2008. This landmark legislation protects individuals from genetic discrimination in health insurance and employment; it was designed to help ease discrimination concerns that might keep people from getting genetic tests that could benefit their health. The law also enables people to take part in research studies without fear that their DNA information might be used against them in health insurance or the workplace. According to Eric Green of the National Human Genome Research Institute (NHGRI), "We have truly lost a genomics champion. Louise Slaughter had the vision that GINA was needed to ensure continued advances in genetics and genomics research, especially for clinical applications — and she was completely right. Our research community will remember her commitment to these important social and ethical issues." GINA is among the laws that will be accessible via the website of the NHGRI-funded LawSeqSM project, for which Consortium chair Susan M. Wolf is Co-PI with Ellen Wright Clayton of Vanderbilt and Frances Lawrenz of the University of Minnesota. LawSeqSM is dedicated to building a legal foundation for translating genomics into clinical application; the website will go live in spring, 2018. 

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Al Levine at podium, Research Integrity Conference 2018

Consortium-led Conference Charts a Path Toward Greater Research Integrity

March 15, 2018

In a recent KARE 11 interview, Consortium Chair Susan M. Wolf discussed current challenges to research integrity and described how they can be addressed. The news report hints at a larger set of issues that threaten to slow advances in knowledge and undermine the public’s trust in science. Last week, at the Research Integrity and Trustworthy Science conference, national experts in biomedicine, the social sciences, law, ethics, and more converged at the University of Minnesota to grapple with pressing research problems, including researcher misconduct, inadequate education of new researchers, predatory journals that fail to perform thorough peer review and oversight lapses. An article in Inquiry, the blog of the University of Minnesota Office of the Vice President for Research (VP Allen Levine is pictured), describes the conference proceedings and delves into the plenary sessions, which highlighted how research ethics rely on three parties: researchers, academic journals, and research institutions. Video of this year's sessions are available here. Information on previous annual Research Ethics conferences can be found here, here and here.  

News

Baby

Georgieff Co-authors AAP Policy Statement on Infant Nutrition

February 12, 2018

Two University of Minnesota professors have co-authored a major nutrition policy paper on behalf of the American Academy of Pediatrics (AAP). Sarah Jane Schwarzenberg of Masonic Children's Hospital and Michael K. Georgieff of the Center for Neurobehavioral Development, a Consortium member, wrote the report on behalf of the AAP's Committee on Nutrition. The article recommends foods that ensure healthy brain development in the first three years of life. It also notes that, while breast milk is preferable for a baby's first six months, after that breastfeeding moms and their partners should supplement infant diets with a variety of foods rich in iron and zinc, including lean meats, fruits and vegetables. An article in MedPage Today outlines the paper's policy recommendations related to major programs such as Special Supplemental Nutrition Program for Women, Infants and Children (WIC), Supplemental Nutrition Assistance Program (SNAP) and the Child and Adult Care Food Program (CACFP), all of which are important to ensuring the availability of healthy food options. The authors encourage pediatricians to provide guidance on "informed food choices" and help families connect with nutritional programs such as food pantries and soup kitchens. Prof. Georgieff is a member of the Consortium's Executive Committee

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Anu Ramaswami

Ramaswami-led NSF Report Outlines Research Agenda for Sustainable Cities

January 25, 2018

How can we harness the big social, technological, and infrastructural changes arising in cities for the greatest good? A new National Science Foundation (NSF) report led by Anu Ramaswami outlines a long-term research agenda that uses a much larger urban systems perspective than is currently in place. Among the paradigm changes it recommends are taking rural-urban trade into account; considering the impacts of the sharing economy, automation and renewable energy; and asking how massive new urbanization expected in Africa and Asia will influence global environments. Ramaswami is the Director of the Center for Science, Technology, and Environmental Policy, a Consortium member. Read more about the report here

News

Jeffrey Kahn

Are Bioethicists Keeping Pace with Rapid Changes in Gene Editing?

January 17, 2018

Jeffrey Kahn, Director of the Berman Institute of Bioethics at Johns Hopkins University, joined Minnesota Public Radio host Kerri Miller today to discuss innovations in gene editing and the consequences that must be considered as it moves into clinical application. New tools like CRISPR are much more targeted than past gene therapies; molecular biology now allows the precoding of both the material and the location affected by genetic change. This raises thorny ethical questions: could these techniques go beyond curing diseases to creating genetic enhancements that could make someone stronger or faster? Could gene editing be used to advance eugenics, by making it possible to change someone's skin color? Will the benefits be widely available, or only help the wealthy and powerful? What does it mean to disabled if we have the ability to wipe out conditions like Down syndrome? Rapid advancements in gene therapy and the development of technologies that are more powerful than originally expected means carefully considered policy and clinical approaches must be put in place. Listen to the whole conversation here. Before joining Johns Hopkins, Prof. Kahn was Director of the Center for Bioethics at University of Minnesota. 

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Whole brain scan

Should Older Judges and Politicians be Evaluated for Dementia?

November 20, 2017

In a talk last week sponsored by Harvard Law School's Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, Prof. Francis Shen, JD, PhD, raised the question of how to grapple with powerful people who show signs of dementia. According to an item from WBUR, a public radio station in Boston, Shen's central point was that "politicians, who have huge advantages as incumbents, and federal judges, who serve for life, tend to stay on the job well past typical retirement ages. Yet we know that some cognitive decline with age is normal, and that the risk of dementia skyrockets as we get older. So it's reasonable to conclude that some judges and politicians are no longer up to their tasks." Shen is a Consortium affilate faculty member who specializes in neurolaw; he's currently a fellow at Petrie-Flom. Ultimately, Shen recommended a middle way, one that doesn't involve mandatory retirement ages for elected officials and judges but also doesn't ignore the social risks of their cognitive decline. Read the entire article here

News

Deborah Swackhamer

Swackhamer to Speak on Scientific Integrity and the EPA

October 10, 2017

This Friday, Oct. 13, Deborah Swackhamer, PhD (Professor Emerita, Humphrey School of Public Affairs and School of Public Health), will discuss the federal advisory committees mandated to oversee the quality and scope of the science used by the US Environmental Protection Agency (EPA). Her talk is called "Scientific Integrity in the Balance: What's at Stake?" and will be held in 105 Cargill at 3 pm on the St. Paul campus; a remote webcast is also available here (registration required). Dr. Swackhamer is a past Chair of the EPA Science Advisory Board, and is the current Chair of the Board of Scientific Counselors, and will share first-hand knowledge of how these committees have done their work, and how they are currently being used by the new Administration. This seminar is particularly timely in light of yesterday's announcement by EPA chief Scott Pruitt that his agency is taking formal steps to repeal a rule limiting greenhouse-gas admissions that was put in place under the Obama administration. From 2002-2014, Prof. Swackhamer was the director of the Water Resources Center, a Consortium member. 

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Underwater research drone

Consortium Scholar Reveals Potential, Pitfalls of New Ocean Research Technology

June 21, 2017

New observational technologies are greatly complicating oceanographic research, even as they present tantalizing opportunities. Because they are less expensive and more networked than ship-based measurements, remotely operated vehicles like undersea drones and satellites can provide an unprecedented amount of data while democratizing the research process. However, these new tools also challenge existing maritime codes such as the United Nations Convention on the Law of the Sea. During the 2015-2016 academic year, Geography, Environment and Society PhD candidate Jessica Lehman was awarded a Consortium Research Grant to explore how these new technologies have become entangled in questions of territory, information-sharing, and politics. Lehman notes, “Concerns about global environmental crises such as climate change push scientists to collect more data and make it freely available online, but nations are concerned that these data may compromise their sovereignty, from military operations to fisheries development. To address these concerns, we can’t make assumptions about relationships between security and new technologies; we have to follow them into the world and see what they are actually doing.” Her Consortium-funded research informed her dissertation, which evaluated the interfaces between geopolitics and international oceanographic science. Lehman is currently an AW Mellon Postdoctoral Fellow in the Center for the Humanities at the University of Wisconsin, Madison; to learn more about her research, click here.  

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